Not much is being done to control Sickle Cell Disease in Nigeria. More cases are reported daily, while patients suffer discrimination and neglect, writes ELO EDREMODA.
NIGERIA is note down as having the highest sickle cell cases across the world. Though statistics are not accurate, researchers say at least three per cent (about three million) of the Nigerian population have Sickle Cell Disease (SCD), while an estimated 30 per cent (64 million) of the populace are carriers.
Reports obtained from online searches and dated 2014, claim that150,000 babies are born with the disease in Nigeria and 70 to 90 per cent of babies born with the heredity disorder die before they are five years old.
According to the World Health Organisation (WHO), through management and prevention programmes, the health burden can be reduced. It has also called on nations to strengthen their response to the disease in terms of providing a low-cost diagnostic and treatment plan. The United Nations (UN) has chosen June 19 as World Sickle Cell Day to raise awareness of the disease.
However, meaningful preventive care and treatment cannot be implemented without a structured plan for early diagnosis and tracking of patients. Early diagnosis requires improved access to parents and guardians of children with SCD, and gaining this access remains a challenge in Nigeria.
Unlike the visible campaigns against diseases such as HIV, Hepatitis, Tuberculosis, cancer, and malaria, among others, in hospitals and by different organisations, the same cannot be said for SCD. There were no displays of placards or flyers with contents on sickle cell disease control or care at some private and public hospital visited in Warri metropolis.
With September, being generally accepted as sickle cell awareness month, although declared by the United States of America’s Assembly, one would have expected vigorous campaigns to sensitise the people to the dangers of the disease. Sadly, this is not the case. It appears that only patients of the disease and perhaps, those who have relatives suffering from SCD carry out the awareness. But not much is seen or heard about these efforts due to the lack of a concerted advocacy network.
An article by Ademola Samson Adewoyin, obtained from google search reveals that there are hardly designated centres for its treatment in Nigeria.
“…there is the gross absence of dedicated sickle cell centres. Thus, it may be difficult to keep abreast of current knowledge and practices in the treatment of SCD.”
The physical effects of Sickle Cell Disease range from a normal build to a tall, lanky physique and increased chest diameter. During childhood, sickle cell patients may be smaller than normal. Puberty is often delayed but considerable growth takes place in late adolescence. Complications for patients include Bone Pain Crisis (BPC), ulcers, among others. The disease is usually diagnosed at birth, but its symptoms begin to show when the child is five months old.
But Anthony Orevaoghene Asiemo, a 30-year-old SCD patient says his symptoms started manifesting while he was yet unborn.
“My sickle cell trouble started when I was in the womb. My mom told me she needed the help of drugs and drips. The doctor told her the baby was sick in the womb,” he said.
In a chat with The Nation, the graduate of Delta State Polytechnic, Ozoro, who works with one of Nigeria’s commercial banks, and runs a blog alongside, recalled how often he found himself visiting the hospital as a young boy. His post seeking to sponsor 10 people for genotype tests on a group-chat drew the attention of this reporter.
Speaking from his hospital bed, he lamented how he would not wish an “enemy” to experience the pains he goes through every time he suffers a crisis.
“It is not something you wish on anyone. It is like someone is consistently hitting your bones with very hard metal. It can just be there for hours, days and you wish for death to take you away. I find myself very often in the hospital. Sometimes I can be admitted four or five times in a year.
“Like now, I have been here for 10 days. Sometimes I will be admitted for a month. It depends on the severity of the case. I spent a whole semester in the hospital while I was in school. I used to miss classes and recovered a few days to my examinations.
“One thing God has done for us is, he gave us very sharp intellect. It didn’t affect my grades, but the process. I got tired of people asking why I was not in school. I hated been called a sickler. So, I hid it in school. It was only recently I decided to come out with it. I realised I needed to talk about it,” he said.
Asiemo noted that despite strict adherence to doctor’s prescription, “crisis still comes. Sometimes you see your dreams fading away before you. There are things that one is restricted from doing. When I was very young, my mum would not let me play with my friends and it hurt me a lot. I didn’t understand why then, but she was protecting me. I couldn’t play in the rain, play football and go fishing with friends. Sickle Cell deprives you of childhood adventures.”
Recalling how he clinched his bank job, he stated that he was “discouraged” when he realised that a medical test was mandatory, but decided to give it a try and was surprised when he received a call to assume duty.
On the reason for sponsoring 10 individuals for genotype tests, Asiemo said he wished that his generation would be the “last set of sickle cell patients in Nigeria. I believe when people know their genotypes, it will be easier for them to make marital decisions or decisions of bringing children into this world.”
He posited that only sickle cell patients actually know their genotypes, which is the solution to eradicating SCD prevalence; as it will enable people to make the right marital decisions. But reports have it that despite knowing their genotype status, some individuals still proceed to marry and end up producing children with SCD.
Findings by our correspondent show that it costs N1, 000 to get a genotype test done in Nigeria. But it is advised that one goes for the test at three different laboratories to ascertain one’s status. This is due to a series of incidents where some individuals find out in future that they were wrongly diagnosed or otherwise, after a single test.
A Community Health Extension Worker (CHEW), at Capitol Hill Hospital in Delta State, Eje-Aya Peace pointed out that medical examinations were done for tertiary freshmen can help track carriers of sickle cell and further help to clamp down on the disease. He noted that institutions are only concerned about the HIV status of students, and as such, discard other health information.
“When some institutions take blood samples, they don’t do it (genotype test) or do not pass the information to students. When I was in school, we did medical tests. If truly we are doing these medical examinations, we will be able to track those that are carriers and counsel them appropriately.
“All schools that make students undergo medical tests should make the results of the tests available to them. The one they are concerned about is HIV. When your genotype test is done, go for a confirmation test. The physiology behind sickle cell is not something you want to dream or imagine,” he stated.
Confirming the medical practitioner’s assertions, Asiemo said the medical test he did in school showed his genotype was AA, even though he knew he was SS. “When I told my mother, she rejoiced and said maybe God had answered our prayers and changed my genotype. We watched out, but I fell sick again.”
Most people living with sickle cell are faced with societal discrimination in Nigeria.
In a chat with over 15 patients, it was discovered that some even endure abuses and torments from family members, parents included, who ordinarily should render mental, physical and financial support.
Other forms of discriminations include people being afraid of committing to a relationship, as well as denying SCD patients job opportunities.
Mrs. Adaka Precious, 31, is a sickle cell patient who shared her estrangement from her father.
“If I go to the town where my parents stay, even if it’s midnight, I will find my way back to my house because my dad will send me back from the gate without knowing my reason for coming. He will say ‘just turn back and go back to your house, don’t bring your problems here’,” she said.
She added that she lost her first pregnancy due to a crisis and her four-year-old son cries alongside her when she suffers a crisis. “When I cry, he will also cry saying ‘mummy sorry’.”
Another patient, Maryam Agoro, who resides in Ikorodu, Lagos state said: “Two things that constantly make me sad are that anytime I have a crisis, everyone seem to put the blame on me like I’m the cause of my problem comparing me with my sisters.
“Also at the hospital, I feel the pain relievers they give me aren’t strong enough. Anytime I beg them to give me an injection that I’m really in pain, they call me a drug addict. The thing is that I really need help myself. I don’t know why my crises are constant.”
Twenty-Three-year-old Agbolade-Oshodi Olaitan, also lamented the apathy of his family, revealing that he sometimes has to sell “stuff” in the house to facilitate treatment during a crisis.
But Taiwo Kabirat Mojisola, a teacher and mother of three, is among the lucky patients who enjoy family support.
In order to end SCD, the sickle cell warriors, as they are called, have called on the federal and state governments, as well as health organisations, to set up policies and carry out rigorous awareness campaigns.
Asiemo said: “You go to churches; they will pray against diseases but never mention sickle cell. In the House of Assembly, they have bills for other ailments but nothing on sickle cell. It is only us patients that are fighting this. If the government can join forces, maybe make laws about marriage and genotype testing, it will help a lot.”
Olaitan, on his part, implored the various governments to provide free treatment and accessible medical centres for people living with sickle cell.
Sickle Cell Aid Foundation (SCAF), a non-governmental organisation, revealed that efforts are being intensified for the push of the Sickle Cell Bill sponsored in 2015 by Senator Sam Egwu, so that SCD may be recognised as a “disability.” President of SCAF, Abuja Elmer Aluge told The Nation via mail correspondence that daily reports show “an increase in cases nationwide”. She added that “constant engagement with stakeholders as an organisation and with the SCD coalition body has been ongoing on various policy and advocacy involvement issues.”